Ready to call it quits

Everyday living
1

Hi everyone,

Apologies for posting as anon.

I have known for definite that I have MS for a few months now. At first I coped ok as I didnt really believe the diagnosis to be honest, despite lesions on MRI, positive lumbar puncture, abnormal VEP’s and a whole array of symptoms. Now though things are different. I’m not coping so well.

I have had symptoms starting from just over a year ago and have been told I’ve had 5 relapses since aug last year. Plus an episode of optic neuritis in jan 11 which I didnt think was related until doc said it prob was. So 6 episodes in a year and a half. There’s no stopping it. I’ve been trying for a baby with my husband for 4 months now and yesterday found out I wasnt pregnant this month (thanks to period starting!). Because i’m trying for a baby I have stopped all medication I was on (pregabalin, amitryptiline, amantadine). And I have turned down the offer of DMD’s too for the same reason.

I am trying to hold down a full time school teacher job and I sometimes feel like it is killing me. it’s so hard work even when I used to feel fit and healthy. But now, it’s feeling impossible. I’m tired constantly and because my sleeping has been disrupted recently (due to a course of IV steroids), I have come close to collapsing several times. Work are really supportive and have said if I need a morning off etc to rest then it’s fine. Or if I want to go part time, then they could prob accommodate it But that to me feels defeatist. If my health stops me doing my job properly then what’s the point?

If I can’t have children, which is how it feels at the moment after 4 months of failed attempts then what’s the point in anything? I feel so useless. I can’t do anything well any more. i feel so tired all the time that I don’t do anything socially anymore. Me and my husband do the food shopping on a saturday then that’s it. I sit at home and rest. Cos that’s all I feel up to doing. I have lost interest in everything so even if I feel like I have enough energy, I just can’t be bothered. Nothing seems worth it.

I don’t know if a baby would make me feel like I have a purpose in life again or not, it’s hard to say. I’m only 26 and feel like my life is over. I wake up every morning and sigh. If I didn’t wake up then I wouldn’t have to battle with life anymore.

I want to go to sleep and not wake up.

:frowning:

2

KNOW THE ‘FEELING!’ ONLY TOO WELL!!! IT TOOK +SIX YEARS TO HAVE A BEAUTIFUL WEE GIRL (she’s nine now). MY BROTHER-IN-LAW HAS THREE GIRLS AND MS (and he’s still working! - AS A TEACHER). YOU COULD TRY ANTI-DEPRESSIVES DE-PENDING ON WHAT THE DOCTOR SAYS. I’M NOT TRYING TO FORCE ANYTHING ON YOU! - ‘DON’T LET ANYONE FORCE YOU TO DO ANYTHING!!! - I’VE HAD MS FOR ALMOST 14 YEARS AND ‘I HATE IT!!’ (THAT’S THE STRANGE THING WITH MS IS THAT YOU CAN LET IT DO IT’S WORST (AND STILL CARRY ON LIVING!) (NOT A PARTICULARLY ‘GOOD’ EXISTENCE BUT THERE ARE POSITIVES AND NEGATIVES!) I WOULD RATHER SPEAK ON THE TELEPHONE AND YOU COULD STILL REMAIN ANONYMOUS!!! (MY WIFE IS AN OPTOMETRIST AND I WAS ONCE A COMPANY DIRECTOR (WE HAD CLOSE TO 140 PEOPLE ON 4 SITES) THERE ARE MANY (GOOD) REASONS THAT YOU CAN SAY F*CK MS! I READ YOUR ACCOUNT AND AGREED WITH ‘EVERYTHING!’ YOU SAID. YOU CHOOSE!!! - [Contact details removed - PM poster]. I’M SCOTTISH, 56 YEARS OLD, WENT TO DUNDEE HIGH SCHOOL AND APOLOGISE IF THERE ARE ANY SPELLING MISTAKES (MY WIFE AND I BOTH WENT TO UNIVERSITY). (WHETHER OR NOT IT IS OF ANY INTEREST - MY WIFE IS AN ARDENT CATHOLIC FROM NORTHERN IRELAND BUT I WAS BROUGHT UP IN THE CHURCH OF SCOTLAND BUT I HAVEN’T GONE (APART FROM SOME EVENTS - LIKE GETTING MARRIED!) AND I DON’T REALLY BELIEVE (UNLESS IT CURES MS!!) - DO ANYTHING THAT YOU WANT TO DO (YOU CAN USE GOOGLE FOR ANYTHING YOU WANT TO KNOW.) - BOY! THAT’S THE FIRST TIME IN 14 YEARS (WITH MS) THAT I’VE BEEN SO ‘OPEN’ ABOUT THIS MS’ I’LL STOP NOW BECAUSE MY FINGER’S ARE GETTING SORE - BUT THEY WILL GET BETTER WHEN I REST THEM.

Marcus.

3

You won’t believe this, but I was reading your replies and my ‘brother-in-law’ phoned. He was phoning to speak with his ‘parents’ who are over from Northern Ireland for a few days - I told him about your ‘predicament’ because he has MS and like you - he is a teacher (and still working - in England). Now, I’m not ‘superstitious’ (or don’t think that I am - it’s maybe because it’s a Sunday and he would have phoned anyway BUT my wife and her parents were ‘not in’ and I haven’t spoken to him for months - after I spoke to him about ‘YOU’, he was ‘painfully aware’ about your situation and I told him to have a look at the MS website (because I am unable to ‘email’ him because - he’s on ‘HOTMAIL’ and I’m on ‘SKY’ and it hasn’t worked ‘before’) - a bit weird though? I had sent my telephone number but it was ‘blanked out’ - if you still want my telephone number then you could send me a message [Contact details removed - PM poster]. My surname is ‘Stout’ and if any of this get’s ‘blanked out’ again then remember that I have had MS for nearly 14 years - I’m 56 and my brother-in-law has MS as well (AND HE IS A TEACHER and has probably gone through exactly the same as YOU!)

Best wishes,

Marcus.

4

Woops! - they didn’t have ‘emails’ when I was at University - I had meant to send my telephone number ‘privately!’ [phone number removed again - Marcus, please stop putting your contact details on the site] for a sympathetic ear?

Marcus.

5

Oh dear I do feel for you, I had to start to go part time then eventually give up a job that I loved , but as for the baby thing don’t give up it has only been 4 months I’m sure it will happen.you will have to relax on your days off,so that you are. Ok for the week of working, have you applied for dla as you are entitled to it and maybe then you could go pt . Thinking of you .

6

Hiya petal,

I’m a man; well sort of; and I’ve just celebrated my 40th birthday; that’s 40 years since my diagnosis.

I also have PPMS not as you RRMS; do these points make a difference? Na not really; MS is MS; I feel your pain; you want to be a mum which is the most natural instinct.

When my wife and I were trying for a child it took almost 1 year and she was healthy; it was great practicing though. It will happen you just have to give it time.

I don’t think that MS makes you less likely to conceive. I would suggest you get your GP to get a simple blood test done for APS Antibodies; Hughes Syndrome or Sticky Blood; this does affect you conceiving and will put your mind at rest; see http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736

Stop worrying; your husband will tell you practice makes perfect.

George

7

Oh my love! This is something we have to pull you back from. I expect you will get lots of replies when everyone reads how low you are.

We cannot leave you to continue feeling like this.

I hope I dont sound harsh with my comments and advice...my only concern is to save you from this awful, depressing state of feeling whats the point.

Yes, it is more poignant that you are a young woman, with a good husband and a job which you will have worked so hard to get, I`m sure.

With you only being diagnosed a fairly short time, it sounds like you could be in denial. Ths comes over when you say you never felt your diagnosis was right.

It must take so much strength of mind to accept this has happened to you. You will have had your life mapped out, career, marriage, a family…then all of a sudden this cruel hammer has smashed it`s way into your plans, hopes and dreams.

I think a trip to your doctor is needed to talk about how low you are feeling. This is caused, I think, not just because you havent as yet, managed to become pregnant , but because you arent taking any meds.

It probably does seem a long time.but 4 months isnt that long really. Ive heard people say when they dont think so much about getting pregnant, it kind of happens on its own. Has your GP mentioned fertility tets yet? Maybe he/she thinks it is too soon for that.

You`ve stopped all your meds and I understand why, but this has made you feel so ill…it would do that, if your symptoms are allowed to run riot through your body.

Does your hubby know just how bad youre feeling? Perhaps he doesnt, eh? Can you talk to him about it?

Now regards your job, it sounds like they are a really caring bunch of folk…so why not take them up on the part-time thingy?

I truly hope things improve for you very soon. Please hang in there love. There is still plenty to live for. Your unable to see that right now, but you are surrounded by people who love you and want you in their lives.

much love, Polly xx

8

Dear Anon,

You are sounding thoroughly depressed and no wonder. MS is one hell of a diagnosis to get your head around and as you say you have only known for a few months that you have it. The diagnosis of MS throws most people for a loop and depression such as you are describing and the desire to just “go to sleep and not wake up” is a real emergency. Please, please see your GP urgently and even print out your post to show him. MS can cause depression as a symptom of the disease too in the same way it can cause optic neuritis or wobbly legs so do see it as a symptom that needs treating and not as a failure on your part.

The MS Society has a Helpline where you can talk to trained people about all aspects of having MS especially the emotional impact. Please give them a ring on 0808 800 8000.

It takes time to come to terms with such a life changing diagnosis as MS. It is a disease that you have to learn to live with for the rest of your life and the really rotten part is that the ballpark keeps shifting constantly. And it sounds like you have had a year from hell in terms of relapses. So as fast as you think you are coming to grips with some aspect of having MS it goes and changes on you again. This constantly changing MS landscape is exhausting to manage emotionally.

You sound a very determined person. Determined not to let having MS change your life or change the plans you have made for your life. But sadly MS DOES change our lives. And it changes them over and over and over again. Which means we are constantly going through stages of loss and grief and recovery and then realising another area of loss in our lives and grieving for this.

The fatigue you talk about is very normal and one of the most important strategies anyone with MS can learn is to pace one’s self. And if that means working full time but then needing the weekend to recharge the batteries so be it. Or if you want to have more of a life on the weekends you may need to think about going part time. But the reality is with fatigue you do need to build in a rest and recovery part to your life. MS fatigue just won’t let you keep on going regardless.

Sometimes major stress plays havoc with our hormones and this might be one of the reasons you are not conceiving straight away at the moment. Also medically 4 months isn’t considered to be a fertility issue although I appreciate how frustrating it is to get your period yet again when you are trying.

MS is a tough disease to live with but with the right support and the right strategies in place you do learn to live with it. You’d be amazed how people learn to adapt and even learn to have fun and find enjoyment from their lives again.

Give yourself time to come to terms with the diagnosis, get some urgent help for the depression and then join an MS Group or talk to your MS Nurse or hang out here on the Boards some more to find ways to live with MS and still have a sense of fulfilment and joy in your life. It is possible,

All the very best,

Belinda

9

I am very sorry that you have having such a tough time.

The thing in your post that kept jumping out at me was the idea of failure. It reads as if, to be successful in your own eyes you need to continue to cope ‘well’ (whatever that means) with the MS diagnosis that has just crashed into your life, while at the same time…

  • performing to a high standard in a demanding full time job

  • being a cheerful and sociable wife and friend with a lively social life

  • falling pregnant as easily as you might if you were a happy-go-lucky, laid back soul with not a care in the world

  • managing perfectly well without any of your medication to help manage your symptoms

  • taking multiple relapses in your stride

  • shrugging off MS fatigue and just getting on with your busy life, much as usual.

You get the picture!

Please give yourself a break here, Anon. You are putting way too much pressure on yourself, I think. It sounds as though you are trying to address a range of complex, difficult and subtle problems by sheer force of will, and then beating yourself up when that does not work. MS is a indifferent to willpower, and so is conception.

Coming to terms with an MS diagnosis is often hard work, and it’s only ever work in progress too, as Belinda said so eloquently in her reply. There is no right way, and reviewing how we define success is part of the journey for many of us, and revising downwards our expectations also - and that can be painful. Please try to go easy on yourself, and allow yourself to believe that you can make a good life for yourself with MS, even if that differs from plan, a bit.

Good luck with it all.

Alison

x

10

Hello & sorry you are having such a hard time. My first thought was that on top of everything, you have very recently received steroids. I’ve not long finished my fourth course in 16 months & it is not uncommon to feel very low mood for a few weeks afterwards, in my experience. Otherwise, some great advice has been given. I’m a bit older than you, also recently ‘officially’ diagnosed after an eventful year of multiple relapses & being fairly prepared for the diagnosis. It still comes as a massive blow though & the realisation that life has & will change significantly is a bitter pill to swallow. I think you need to share how you are feeling with your doctor. I understand your reluctance not to take drugs, but perhaps a referral to a counsellor would be beneficial. In the meantime keep posting here because most can empathise and those that have been through similar experiences can hopefully reassure. Take care.

11

I would like to add a few things to some of the great advice you’ve already had, but before I do that I want you to know that it does get easier. You’re going through a really tough time right now, but it will get better.

The first thing I wanted to add is that, as zigzag has already said, steroids can cause temporary depression / emotional problems. As they work out of your system, you may find that your mood improves and that these black thoughts go. However, even if they do, I think you would really benefit from seeing a counsellor who knows about MS or dealing with serious diagnoses. Your GP should be able to refer you to someone, but if not, have a look and see if there is an MS Therapy Centre near you who has an MS counsellor. I saw a counsellor when I was newly diagnosed and it honestly made a huge difference.

The next idea is almost certainly going to be unwelcome, but I really hope you will seriously consider it: do you have to try for a baby right now?

Perhaps you need a bit of breathing space to get your symptoms under control and your head around what MS means for you first? Going onto DMDs for a year or two might also allow your body to get your MS under better control? You’d still have plenty of time to start a family.

If you’re determined to keep trying for a baby, have you checked if there are any meds that are safe to take that could help you with your symptoms? Plenty of women get pregnant by mistake while taking drugs so researchers are able to study the effects and know which ones are safe and which ones aren’t. Your neuro may be able to advise on this if your GP can’t.

The other thing to do is to take your Head up on their offer of a morning off, but also look at what else they might do to help you (e.g. could you do paperwork at home? could you have someone else take playground/lunch/… duties? etc). Employers have to make “reasonable adjustments” to help people with MS to stay in work - it’s not just “nice” of them; it’s the law. Access to Work may be able to help you with this so you could try giving them a call if you aren’t sure what to do.

Doing this is anything but defeatist - it is finding ways to fight on! Better to make changes that allow you to carry on, albeit slightly differently than before, than for your body to become completely exhausted and allow your MS to have free rein.

One final thought: are you really ready to be back at school? Perhaps you need a complete break from work to allow your body to recover from this latest relapse and the steroids? I’m sure your GP would sign you off for some r&r.

I really hope that things get better very soon for you.

Hang in there!

Karen x

12

Sorry that you’re feeling so low Anon. A teaching job is very stressful and all consuming especially when you have a chronic illness. I gave up my job as a supply teacher about 18 months ago as it was too much for me and that is without all the meetings, paperwork and assessment etc that you have. I am sure you have worked really hard to become a teacher and that you love the job. I did and I really miss it. But you need to give yourself a break, you have a chronic illness and need to adapt. Although you want things to stay the same and live a ‘normal’ life, I’m afraid you will have to change it so that you cope. Karen’s idea of some time off is a good on. This i’s the busiest time of year in a school, do you need all this work stress right now? You health and mental well- being are the most important things here. I’m sure your husband must be worried about you. Please seek some help and look after yourself. Less stress will help you to cope better. Think about a break from work or a job share. Good luck with the baby making. This may happen if you feel less stressed and worried. Thinking of you during this tough time. Don’t try to cope on your own, let others help you. Teresa xx

13

Hey all,

Thank you for your messages. I appreciate everyone’s suggestions and comments of support.

I don’t feel ready to go part time, not at my age. I need to keep going. If I can’t cope full time then I will just give up.

Counselling has been suggested to me, the docs don’t know how low I am though. My husband doesn’t even know how low I am. I don’t want him to know cos that shows weakness.

I need to get pregnant soon to get myself out of this black hole.

Fingers crossed it happens next month. Or I dread to think how i’ll cope.

Thanks again for all your messages, I wish I had the strength that some of you guys clearly have xxx

14

Just to add to my last message, Polly you asked about fertility tests. I went to the docs last month and they said we would have to wait til we’d been trying for 6 months til they’d do blood tests, then another 6 months to do further tests. Don’t think I can wait that long :frowning: x

15

It i’s not ‘weakness’ to admit that you are ill and need help help Anon. Everyone needs help sometime in their lives. Teresa xx

16

Hi Teresa, but I hate the thought of people thinking I am just full of self pity. There are people far worse off than me so I ‘should’ be grateful. But I find it hard to think like that xx

17

Please don’t mistake a certain personal experience of how grim the early days can be for strength. The only kind of strengh that’s worth filtered word in this game is the resilience that expresses itself through an ability to adapt to circumstances: to bend rather than to break. I wish I had more of it, as do most of us, I guess. And I wish it for you too. Take heart. Karen’s right - it does get easier.

Alison

x

18

No one thinks that you are full of self pity. Every human being would need help dealing with what you are. No one can isolate themselves and deal with their problems alone. It is impossible. We all need ro rely on each other. That is part of the human condition. Please don’t try to deal with this alone. We are all happy to help but most of all your family, friends and GP will. Lean on them, you need to. Teresa xx

19

Hi. I’m sorry I can’t add anything to the ms side, I’m still undiagnosed but you’ve already had some great advice.

As for babies, I have 3 kids. One I was pregnant in the first month, another it was 5 months and another it was 12 months but not in that order. Being so worried and depressed won’t help but I was also advised to take zinc supplements after trying for 10 months and that seemed to do the trick. My gp advised it as he noticed white spots on my nails and that is a sign of zinc deficiency.

I do think Rizzo is right. Do you need to have a baby now. I know you feel it will help bring you back up but it doesnt always. I suffered terrible PND after all 3 of mine and it felt like I was in a black hole. My middle one did nothing but cry and I seriously considered leaving him on the doorstep of our doctors surgery.

Take work up on their offer to take some time out and relax. Think of it as preparing for a baby but please try and take care of yourself.

xx

20

I’m quite a stubborn person unfortunately and hate to ask for help with anything. This is something that I have grown up to be like. I hate talking to people I know about how I feel Teresa, hence why my husband and gp don’t know how low I feel. I cant bring myself to say it. And hence why I have come on here as anon.

Shirleymoss- would I be eligible for dla? i don’t think i would would I? does anyone else know this?

xx